well it looks like I don't have CMT

June 21, 2006

,

Very interesting. I can relate all to well. During the last 44 years,

even though in 1962 I was diagnosed with CMT, I was re-diagnosed with

just about everything else at one time or another. Each doc I went to

for " the answer " only had more questions and a completely different

diagnosis. My original diagnosis as a kid was made simply by

watching my walk up and down of the halls in my doctor's office.

I saw so many docs, orthos, PTs, etc, ad infinitium, all had very

definite diagnoses for me - RA, FA, 's, MD, MS, to name a few.

Until I had tests. Blood tests, EMGs, NCVs, muscle biopsies, the

early brain tests (pre-MRI days) and even spinal taps. None of those

tests confirmed I had ANY of the diagnoses given; the most recent

EMG/NCV in 1998 even showed 'normal' readings. However, this,

combined with 'reinnervation' (nerves rewired themselves) *indicated*

to the electrodiagnostic neurologist that *perhaps* I may have

a " less common form of CMT, one of a neuronal/axonal nature " -

translated for you, some form of Type 2, maybe.

I surrendered. I gave up trying to figure out what was wrong with me,

because, you see, by this time, I had to re-examine the word 'wrong'

and understand that nothing is wrong! At the same time I found a

deeper level of acceptance for my 'neuromuscular syndrome' - whatever

it is, and stopped the 'doctor chase'.

Now, realize also there is no CMT in my family tree that I have been

able to find on top of this. Nor have the younger generation of

little 3rd cousins had CMT 'appear'.

Who knows? Maybe one day I will have the DNA blood test, and it too

will come back negative. But for now, I am at peace, understanding

sometimes I have special needs due to some sort of neuromuscular

funtioning. And for now I ride with my childhood diagnosis of CMT.

I wish you all the best in your quest. Take this with you: " You are

here to enable the divine purpose of the universe to unfold. That is

how important you are! " (Eckhart Tolle " The Power of Now " )

~ Gretchen

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